Fifth

 Emmeline is currently about two hours into her fifth surgery to remove the remaining nevus on her ankle and calf, as well as a small one that we recently noticed on her back.  It's about the size of a normal mole, but as Dr. Chester says, it looks a little "funky," so we're going to take it out.  It was hoped that this would be her last surgery, but the nevus on the ankle is still large, her tummy is not, and thanks to a recent growth spurt, the nevus is a little bigger and the tummy a little flatter than it was when Dr. Chester saw her at our pre-operative consult a few weeks ago.  But we'll see.  And if we don't get it all, we'll do this again next year.

Emmeline did great going into this surgery.  Each year older means she understands a little bit better what is going to happen.  I talked to her about what was going to happen several times this past week so she would know what was going to happen.  I told her we would wake up early, go to the hospital (with Dolly), change into some jammies, and then she would take a nap while Dr. Chester fixed her leg.  She knew that it would hurt (She would say, looking a little tearful, "It will hurt me," or "Dr. Chester will hurt me" sometimes, which just broke my heart), but I told her that she would be asleep for much of it and then would get medicine afterwards to help with the hurting.  She repeated that back a few times, which is usually a sign that she understands.  She wanted to know where I would be, and I assured her I would be there with her until they took her back for surgery.  Dolly got to go back with her, and Wes and I are in the PACU with her when she wakes up.  In the past, we've been home by 1PM, so I'm hoping for the same today.

I got up at 4:30AM this morning, as we had to be at the hospital at 5:30AM for a 7:15 start time.  I got Emme up around 5AM.  She was groggy getting onto the toilet but fully awake by the time she was getting dressed.  I picked out a fun outfit for her to wear to the hospital, and she has something new (and roomy to fit over the cast) for afterwards.  We got to Children's on time and checked in.  She looked at the fish tank, played on the LeapPad, and colored.  We didn't wait too long before we went back into the holding area.  They took her vitals, I talked to the anesthesiologist, Dr. Chester came by, and we confirmed her name and birth date and allergies several times over.  Emme put on her special jammies, and she played in the bed and in the little push car they brought in for her.  She seemed to sense that something was coming and would get a little nervous when someone new arrived, but otherwise she laughed and giggled with me like normal.  She kept checking out the little boy across the room from her.  I thought she might cry when they took her back, like she did last year.  But when the time came, I gave her a big hug and kiss, and they carried her (and Dolly) off without incident.

They called from the operating room about 15 minutes ago to let me know they were "working diligently."  The doctor who called was telling me how cute she was going back to the operating room and getting hooked up to the monitors.  It sounds like she was giggling and just being cute.  They cracked a joke about her brother's stinky feet (related, I think, to the gas that helps put her to sleep), which made her laugh.  I am thankful that the child who needs all these surgeries is also the one who most likely bears it best.  Or perhaps the relationship is causal in the opposite direction.  Nonetheless, I'll be glad when she's done with these -- whether today or a year from now -- and she can just run and play without having to take a break from her craziness for surgeries and casts.

Update: Emmeline's surgery lasted around 4-5 hours yesterday.  They ran out of consult rooms by the time she was done, so the surgeon just came out and talked to me.  She wasn't able to get all of the nevus, but she got most of it, so the next surgery should be the final one.  Emme's belly was too taut to take the skin from the same place as before, so she has to large incisions from just to the left and right of the belly button and up each side.  Emme has a full cast on this time, halfway up her thigh, and it's pink.

She woke up from anesthesia in a relatively good mood.  The nurse kept commenting on how unusual it is for kids to wake up happy like that.  She drank some juice while she sat with us, and then the nurse unhooked her and sent us on our way.  We were home by early afternoon.  Emme camped out on the couch for about three hours, watching Daniel Tiger's Neighborhood and Finding Nemo. She looked exhausted but never napped.  She kept complaining (even in the PACU) that she wanted to walk and wanted "this thing" off her leg.  Mid-afternoon, she told me the surgery didn't hurt.  She's such a feisty little girl!  I had to change the gauze around her belly because her first few post-surgical diapers were so full that the top of the diaper leaked into the gauze, and open wound + urine is just not a great situation.  The incisions are pretty gnarly, and after two changes just in the afternoon, she's since whined for me not to take off her "bandaid" again.  Fortunately, she's not overflowing her diapers anymore and can sit on the little floor potty, so the gauze has stayed dry and clean.

She had a good day today, waking up relatively happy.  She's tried to stand and walk some but hasn't been able to put enough weight on the cast to do either successfully unsupported.  I got her out in the stroller some yesterday, took her to Target and a friend's house today, and she plays some with the other kids when they're home.  She did wake after bedtime tonight in pain, complaining about her side incisions.  I gave her some ibuprofen -- the only dose she's had today, I think.  She's going to daycare for about two hours Thursday while I have an appointment -- just a visit, really, to see how she does.  And then she'll go back next Monday.  She has an appointment on November 25 to see Dr. Chester and hopefully have the cast removed.  Here's hoping everything heals well!  

Surgery #4

Emmeline had her fourth surgery on her congenital nevi at the beginning of November.  She's almost completely healed from it now, with a bandage on the lower half of her leg and one on her shoulder, where a small nevus was taken out.  Our surgery was a bit later this time, so I didn't have to wake her up early.  She fortunately made it the few hours to surgery without fussing about food or drink and instead played around the waiting room.  She checked out the fish in the tank, we read some books I'd taken (including a new one, Little Blue Dump Truck), and she carried around the infectious disease stuffed microbes Wes brought home from the CDC is her cute little purse.  (When her surgeon was completing the pre-surgical checklist, she asked, "Any exposure to infectious disease?" she laughed and said, "Well, I guess she's been playing with MRSA and the flu and...".)

They carried her off to surgery just before 9am, and this was the first time she cried when they did so.  She'd been shy of the nurses and anesthesiologists all morning, as though she knew what was coming.  She was out in about three hours, and we were home in about three and a half.  She was pretty upset when we got back to the PACU -- just couldn't get comfortable and wanted her IV out.  The PACU charge nurse knew Wes, which may have led to her discharging us pretty quickly.

I took her home and had her sitting on the couch with a sippy cup and some Cheerios by the time my mom got there.  She took a short nap in the afternoon and was sore but consolable.  On Tuesday she would sit by herself and play with toys but wouldn't move around at all.  On Wednesday we went to the library in the morning with Oliver for story hour, and she was starting to move a little bit.  She wouldn't put weight on her healing leg (which was casted) until Thursday or Friday, when she started pulling up, and by Sunday she was walking -- then running -- on her cast, which made it easier to return to daycare on Monday.

We successfully made it 10 days with no back (stinky Emme!) before we saw Dr. Chester for a follow-up.  She took the cast off, and we were able to just start wrapping it.  It looks like it's healing well -- no infection (surgery #2) or gaping wounds (surgery #3) this time.  The surgeon thought we might be able to get by with just one more after this go-round, another graft, but we're skeptical with such a significant band left that it's possible.  Regardless, we probably won't do anything until next fall again, which means she'll have time to just play and run.  Still, we're getting closed to being done with surgeries!

A hole in the leg

Emme hasn't been healing very well from her last surgery.  She took off her own cast several days after surgery, and when she did, we noticed a small open wound that looked like the cast had rubbed a raw spot on her leg.  A few days later, after the cast had been off for at least a week, we saw the surgeon for a follow-up appointment and she had another small one.  By the next week, she had gaping wounds all around the circumference of her leg and up on her calf where the other satellite nevus was partially excised.  It wasn't clear what happened, but it didn't look good.

Four weeks plus out from surgery, it still doesn't look good.  We've been back to the surgeon, who said that Emme might have infected a small piece of the sutures, which then infected all of the sutures, causing the inflammation and open wounds.  She's on Bactrim now, just in case.  Wes says it doesn't look infected, and we're taking pains (no swimming lessons!) to keep it that way.  We actually haven't been wrapping it recently (don't tell the surgeon!) because that seems to help it close up faster.  It's going to be super ugly when it all scars over, but at this point, there's nothing else to do.  She has at least one more surgery, probably more left, so those scars will just be part of what gets excised then; they're not permanent.  This does make me worried that we're going to have problems with these remaining surgeries, as we did to some extent with the last graft.  There's really no way around it, though, and as usual, Emme is very stoic and hardly gives any indication that there's something wrong.

Oliver, not to be outdone, has skinned up both his legs.  The day that Emme's leg looked the worst -- gaping, oozy wounds -- Oliver refused to sit down in the bathtub because he was afraid it would hurt.  Emme, meanwhile, played happily next to him and protested when it was time to be done.

Yup, those are my kids.

Round three

Keeping busy before going back.
She couldn't eat or drink in the morning!

Her special scrubs

Dr. Daddy in the waiting room

On the way home with her big cast.
She had taken it off by Friday!

Round 3

Begins April 30 at 7:15am.  Let the countdown of no-cast days begin :(

Filet o' baby

So here's the very long update on Emme's surgery.

Friday night

Emme had her surgery almost three weeks ago now, and a lot has happened since then.  She recovered from the surgery itself pretty well.  She woke a bit more often the first and second night but then went back to sleeping through the night.  On the fourth or fifth night, though, she started sleeping horribly.  For several hours after she went to bed I would hear her up there, rolling around and banging her cast against the side of the crib.  She would cry this sad, pathetic cry.  She would wail several times.  No one slept well.  One night, I put Oliver into bed with Wes and slept upstairs in the hopes that at least some people would wake more rested.  Downstairs, without me getting in and out of bed, the boys got one solid night. Then we gave Emme a bath and rewrapped the cast and she went back to sleeping pretty normally.  I even took her to the pediatrician's office one afternoon just to make sure she didn't have an ear infection -- she didn't.

We saw the surgeon one week post-op.  She looked at Emme's abdominal incision and since the cast looked like it hadn't moved, sent us on our way.  We went back two week post-op and got the cast off.  And what we found was a relatively healthy looking graft with one spot that hadn't taken.  One big, red, nasty spot on the side of her foot.  At first I thought it was an ulceration from the cast rubbing again it (which happened on her heel after the first and second surgery), but it turns out that for some reason, the graft just hadn't taken there.  Emme was funny getting the cast off.  As soon as it was peeled away, she was wiggling her toes, stretching her ankle and rotating it, and scratching the dry skin under the cast.  Dr. Chester rewrapped her foot with layers of Vaseline gauze (Xeroform), regular gauze, Kerlex, and an ace bandage and sent us our way with an appointment for five days later.  Emme got fussy before we left, but I thought it was just because that sore spot had been irritated by her rotating her ankle around.

Her battle wounds

I dropped her back at daycare with things for the teachers to watch for and headed off for meetings and class.  At 4:30, with more than an hour of class left to go, I got a call from the main teacher, Kendi, who told me that Emme had been fussy all afternoon -- unless she was being held.  I ended up leaving a little early from class to pick the kids up and found Emme in the arms of one of the part-time student workers.  She was a little sleepy but not terribly fussy the rest of the evening.  The next morning, she seemed find.  I  took her to daycare but dosed her before she went in case she was in some kind of discomfort.  I saw her at lunch and she seemed fine.  I didn't even give her another dose of pain medication.  Four hours later, I got a call from Kendi saying that Emme had a fever of 102.6.  I immediately called Dr. Chester, then Wes, and then picked up the kids.  Emme was really got and clearly uncomfortable.  We hadn't changed her dressing yet since we'd decided to do evening changes.  Wes got home, pulled the bandage off, and then called Dr. Chester to chat.  Dr. Chester decided to hold off on any antibiotics until she saw Emme the next day.

Monday night

Emme was clearly feeling very poorly Friday night.  She slept soundly, but when I got up to nurse at 5:30, she was burning up.  Her temperature was 102.9.  She slept most of Saturday morning.  Wes took her to see Dr. Chester at 11:00 AM, then called less than an hour later to say he was taking Emme to the pediatrician's office.  Dr. Chester wanted them to check her over and make sure there was no other explanation for the fever, then figure out what to do next.  Wes saw the pediatrician who was available, not our usual doctor, and was less than impressed.  He said he kind of wanted to send everyone else out and just do what needed done himself.  They saw that her ears were still clear, took a urine sample (with a catheter -- ugh), and checked for any other issues but found none.  They considered briefly admitting her to the Children's Hospital but decided instead to do two intermuscular shots of a broad spectrum antibiotic, one on Saturday and another on Sunday.  Wes and a very tired Emme were home around an hour later.  She slept much of the afternoon and had another solid night of sleep.  She had a long afternoon with no wet diaper, which started to worry us, but then started peeing again late at night.  We switched to twice-a-day bandage changes, using Silvadene on the spot where the graft didn't take.

Emme woke up the next morning with a fever, somewhere around 101.  She was still pretty sleepy, went for her second shot, but then, according to Wes, was a little more active in the afternoon (while I was finishing my last paper for the semester in anticipation of her being home on Monday).  She slept fine Sunday night.

Monday morning she woke up much more normal.  She still had a 100 degree fever, but not even high enough that she'd be sent home from daycare.  She was very active and just seemed much closer to normal.  Dr. Chester said her foot looked much improved from the weekend and felt that, even though it didn't entirely make sense, the fever must have been from the graft.  She's on Keflex orally three times a day for the next week.  She still isn't at 98.6, but she's close enough.  She went back to daycare on Tuesday and did fine.  Dr. Chester thinks the spot the didn't take will be small enough to scar over and not need another graft, which was a consideration for a short time.  She'll have to wear the bandage until the scar forms.  We're hoping there's enough healing by Friday that she can get a bath!

At this point, it seems like Emme's graft will be okay.  She will put weight on her right foot, but the bandage is thick enough with all the gauze that she won't try to stand independently or take steps (though she will walk while holding on to my fingers).  We're really happy that this small bump didn't necessitate any hospital time and that Emme seems to be feeling better so quickly. 

Hospital charges for one skin graft: $31,993.40.  A happy, health baby girl: priceless.

In parts

Today is Emme's second surgery for the large nevus on her right foot and leg.  It's 8:55 AM now, and she's been back in the operating room for almost an hour.  I woke her last night around 2:30 AM to nurse her as late as I could (no breast milk after 3 AM for the anesthesia), then was back up shortly after 5 to pump and get ready.  I woke her around 5:45 -- she was not appreciative but came around when I offered her a pacifier.  She was generally agreeable for most of the morning.  Everyone in the waiting room was watching her crawl around, push the train car I brought for her, cruise along the chairs, and stare at the other kids and their parents.  We did lose a shoes somewhere along the way, but after retracing our steps here at the hospital to no avail, I'm hoping it's somewhere between her room and the garage at home.

We were one of the first ones to go back around 6:45; I think they take the infants first thing.  She climbed all over the crib in the room, played with her duck, and flirted with every male that came by (I swear -- it really is just with the guys!).  She was fairly even tempered until around 7:30 AM, by which time she was clearly getting sleepy and probably wanted to eat.  She rocked with me a little and went happily to the nurse anesthetist (who said he had an 18-month-old girl at home and was enjoying a "little baby" in his arms) around 7:45.  Caroline Chester, our fantastic plastic surgeon, checked her out shortly before that.  She was surprised to see how much Emme had grown since her last appointment in July.  She was also pleased to see how much elasticity she had in her calf and decided, if time permitted, to do another staged excision on the ankle in addition to the graft today.  Emme will end up with donor site on her abdomen, plus the excision and graft on her ankle under a cast -- a lot of healing, but hopefully not too much limitation to her movement.

Note the purple X on her leg to mark
what limb is being worked on.
Dr. Chester said they make her do it,
though we agreed that in this case it
seem unnecessary!

I am in the waiting room for the duration.  Wes, who is on Ollie duty today before and some time in the ER enrolling patients for his studies, will come over once we hear that Caroline in on her way out.  I will update this post when I hear anything, but if last time is any indication, I'll (hopefully) just hear that things are progressing.

10:24 AM: Karen, a nurse from the operating room, called to say that Emme is doing fine.  Dr. Chester is working on getting the graft onto her foot.  She anticipates probably another hour, at least.  Will either be called back or get another update by then.

12:47 PM: And home.  More updates later, but generally all went well.  Right now, I'm going to hold a pretty pathetic baby.

8:58 PM: Emme's been pretty sad this afternoon.  She has a huge incision on her abdomen from hipbone to hipbone, and we don't even know what things look like under her huge cast (on for ten days).  Dr. Chester decided not to do the excision on the top of the nevus because she worried it would be too much at once.  Emme has been very still for the most part this afternoon.  She cries these sad, half-hearted little bleats, then falls asleep for a few minutes if I rock her, then bleats again. I got her to sleep a little in her swing (which we kept out past its regular use for this very reason), and we put her down for the night around 6 PM.  She's cried a little -- always the sad, tired, moaning cry, nothing serious -- but has mostly slept since then.  If she can make it through most of a normal night, I think we can get her back on her schedule tomorrow.  She had very little baby food today, so I think she's going to be really hungry tomorrow.  She also hasn't nursed a whole lot.  I gave her small bottle of water when we had dinner just to see if she was interested, and she did drink an ounce or so.  Wes and I are both worn out from poor nights of sleep last night, a generally irregular schedule for him the last few nights, and a cold and cough for me.  I'm not sure what tonight will bring, but we do have four days off all together.  And Oliver has just been fantastic this afternoon.  He is clearly very concerned about Emme's well-being and wants to know why she's so sad.  He also really wants to see her boo-boo.  He brought her pacifiers and toys throughout the afternoon and looked through a magazine to find "slippers and jammies" for her.  He's definitely been a good big brother.  Wes did manage to get a faint smile out of her at dinner, and Aunt Margaret and Uncle Ben sent flowers (with a teddy and 3 Musketeers bar!), which I'm sure cheered her up.

Baby is crying; here's hoping she has an okay night.

(Last night, with the surgery finally imminent, I spent some time reading about skin grafts and treatment options for congenital nevi.  I sometimes feel like we're going through all this for no reason, but then I remember the high risk these large/giant nevi carry for melanoma, especially before age 3, and I figure the relatively mild inconvenience and discomfort caused by these surgeries is certainly worth it to, hopefully, avoid skin cancer in the future.  For more information on congenital nevi, including the risk factors for large or giant nevi, go here.  Note that Emme's large nevus has a 1:500,000 occurrence in infants.  Add that to the incidence of aplasia cutis congenita, with 500 reported cases since 1767, and maybe she should play the jackpot.)

Cast away

Emme went to her follow-up appointment with the plastic surgeon yesterday.  She removed the splint, said everything looked like it was healing well, and told us to come see her at the end of the summer.  She doesn't want to do the next surgery until Emme is almost one and plans to do the graft to the top of the foot next.  Emme still has a stitch at her knee, and the Dermabond at the scar on her ankle is still peeling away.  The skin is a little taut, so we're massaging it every day to help it relax and soften.  She doesn't seem bothered by any of it at this point, and she really enjoyed her full bath last night.  Wes thinks she just likes to be able to squirm more thoroughly.

They did run a pathology on the skin that was removed (something I hadn't even thought about), and there was no sign of melanoma or other concerning changes in the skin cells.  We also received our hospital bill for the surgery yesterday (note this does not include the surgeon's fee or anesthesiologist's fee): just under $19,000.  

A work in progress

Tomorrow is Emmeline's surgery.  I'll be updating this post throughout the day as the procedure happens so that friends and family can get an update.  We're supposed to be at the hospital at 7:30am with the procedure set for 9:30am (and no nursing after 4:30am -- oh no!).

6:59AM -- Not a great night of sleep for anyone.  Emmeline is waking up on the couch, where we slept for an hour or two this morning.  I'm pumping, hoping to empty my body of the thing she can't have until after surgery.  It's cold and gray and wet outside.  Heading to the hospital in about 15 minutes.

9:13AM -- Just handed Emme off to one of the anesthesiologists to go back for surgery and am now camped out in the waiting room until I get an update.  We got to the hospital around 7:30, checked in, did a few laps of the waiting area, and went back after not too long for vitals and such.  I've told about twenty people now that she doesn't have allergies, asthma, or a runny nose.  She even got enrolled in a pneumonia study (as a control, of course) that Wes is a part of (the CTA had to call and make sure it was okay!).  I was fine handing her off but had a moment of pause watching her walk down the hall with the team.  I'm sure she'll be fine, but it's always weird watching somebody cart your kid off.  She did manage to keep it together sans milk though she got pretty worked up for about 10 minutes near the end.  She for sure won over all the nurses and techs and doctors who saw her with her grins and spit bubbles.

Dr. Chester said probably 1-2 hours for the surgery, and the anesthesiologist said at least 1-2 hours after surgery before we can go home, so we'll be here for a little while.  She also said she's probably going to put her in a plaster cast afterwards just to speed healing.

11:00AM -- Nurse from the operating room called to say everything was going well.  Nothing specific to update, and no timetable for when they'd be done, but so far, so good.

1:56PM -- And home.  Right around noon, I was taken to a consult room and told that surgery was wrapping up.  Probably ten minutes later, Dr. Chester came in to tell me how things went.  She had pictures on her iPhone of before and after.  Emme is in a plaster cast clear to her hip, so we won't see the finished product for two weeks.  She took 2 1/2 cm off of the nevus, plus one larger one on her knee.  The anesthesiologist had a little trouble getting an IV in, but ultimately it was fine.  As soon as I left the consult room they were ready to take me to the PACU.  She was already waking up and had demanded something to eat, evidently, so they'd given her some Pedialyte.  Wes showed up shortly thereafter (is it just me, or is he always there right at the end of the excitement?) to see how she was doing.  She's been hungry and fussy.  She'll be okay for a minute, relax in my arms, and then get kind of upset -- a mixture, I think, of pain her leg, the anesthesia drugs and tube down her throat, and even maybe the IV site.  Because she woke up so well and ate so quickly thereafter, they let us leave pretty quickly.  She fell asleep on the way home, so I left her in her car seat, but we'll see how long that lasts.  My guess is that the afternoon (and next few days) will involve a lot of baby holding, Tylenol, and general soothing until she gets used to the cast and initial pain wears off.  Many thanks to those who sent prayers and good thoughts our way!